If your primary doctor suspects that you have myelofibrosis — often based on an enlarged spleen and abnormal blood tests — you're likely to be referred to a doctor who specializes in blood disorders (hematologist).
Because appointments can be brief, and because there's often a lot of ground to cover, it's a good idea to be well-prepared. Here's some information to help you get ready, and what to expect from your doctor.
What you can do
- Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
- Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes.
- Make a list of all medications, as well as any vitamins or supplements, that you're taking.
- Take a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For myelofibrosis, some basic questions to ask your doctor include:
- What is likely causing my symptoms or condition?
- What are other possible causes for my symptoms or condition?
- What kinds of tests do I need?
- Is my condition likely temporary or chronic?
- What is the best course of action?
- What are the alternatives to the primary approach that you're suggesting?
- I have these other health conditions. How can I best manage them together?
- Are there any restrictions that I need to follow?
- Should I see a specialist? What will that cost, and will my insurance cover it?
- Is there a generic alternative to the medicine you're prescribing me?
- Are there any brochures or other printed material that I can take with me? What websites do you recommend?
- What will determine whether I should plan for a follow-up visit?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask additional questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may allow more time to cover other points you want to address. Your doctor may ask:
Mar. 25, 2014
- When did you first begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- What, if anything, seems to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
- Hoffman R, et al. Hematology: Basic Principles and Practice. 6th ed. Philadelphia, Pa.: Churchill Livingstone Elsevier; 2013. http://www.clinicalkey.com. Accessed Sept. 23, 2013.
- Mesa RA. The evolving treatment paradigm in myelofibrosis. Leukemia & Lymphoma. 2013;2:242.
- Tefferi A, et al. One thousand patients with primary myelofibrosis: The Mayo Clinic experience. Mayo Clinic Proceedings. 2012;87:25.
- Myelofibrosis facts. Leukemia & Lymphoma Society. http://www.lls.org/#/diseaseinformation/myeloproliferativediseases/idiopathicmyelofibrosis. Accessed Sept. 23, 2013.
- Thorium. Agency for Toxic Substances and Disease Registry. http://www.atsdr.cdc.gov/toxfaqs/tf.asp?id=659&tid=121. Accessed Sept. 23, 2013.
- Jakafi (prescribing information). Wilmington, Del.: Incyte Corporation; 2013. http://www.jakafi.com. Accessed Sept. 23, 2013.
- Bone marrow transplantation and peripheral blood stem cell transplantation. National Cancer Institute. http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant. Accessed Sept. 25, 2013.
- Cook AJ. Decision Support System. Mayo Clinic, Rochester, Minn. July 5, 2013.
- Mesa RA (expert opinion). Mayo Clinic, Phoenix/Scottsdale, Ariz. Sept. 26, 2013.